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Extremely anxious to have clear ALS symptoms

PostPosted: September 30th, 2014, 5:23 pm
by reanne2489
Hi all,

I have been perusing this forum for some time before taking the time to dive into describing my symptoms. On the ALS forum, patients have ruled out my symptoms as ALS, and I know anxiety can make us believe otherwise, buy my progression/ development of symptoms suggests it could be this disease.

I will mention what first alerted me to something perhaps not being quite right...

Since April, with living in Beijing, it gets very hot. So naturally this is flip flop/ sandal weather. Here I have very large feet so used to wear these crazy large shower flip flops everywhere for 4 months, and would regularly trip over in them. I put this down to bad footwear as tripping has not happened like that since.

At this time I started to develop occasional aches and pains in my legs- again I put this down to strain from the footwear. But I would also get this aching in my arms, wrists and hands too and still do.

However, over July/August, I suffered from occasional cramping in my left leg- I can certainly recall 2 occasions. One I put down to doing excessive amounts of walking in said crappy flip flops and the second was in bed at night after traveling home to the UK on vacation so perhaps down to fatigue after travel. Who can be sure...

HOWEVER, fast forward to one month ago. Obviously the ALS ice bucket challenge is everywhere, even here in China. I was reminded of my tripping, and then saw twitching was a symptom, so in bed one night I couldn't stop fixating on my left left calf twitching/ jerking repeatedly and my right shoulder blade twitching. I was then so freaked I sat up worrying about this.

The following day and every since, it has felt like my calves, especially the left one, has been buzzing and twitching. I get the random twitches all over- feet, claves, thighs, buttocks, abdomen, shoulder, arms and hands. But they are infrequent throughout the day and move around. The left calf however is absolutely 24/7. During the day when I'm walking around I won't notice it so much, but when im sitting down, I can either feel throbbing twitches or at night have real trouble sleeping because it "vibrates". Therefore, I constantly toss and turn and find it hard to sleep.

In fact, I often wake up because it feels sore now. And I just experienced a really painful cramp in that calf which woke me and again this has me spooked about ALS.

This leg has been hurting for a number of days, with my knee joint, ankle and top of my foot feeling sore. I had hoped this was down to doing some general exercise and strength tests on this leg such as attempting to balance on my toes and on that individual foot etc.

However, the doctor did agree with me when I worriedly pointed out that the knee on this left leg and the calf is a little smaller than the right- but he said my reflexes and response to strength tests were fine and did not use the word "atrophy"...

I know my left leg is not my dominant one, and the calf muscle has a history of being tight- such as when squatting, I cannot do a deep single leg squat on it like my right, and when squatting in general I have to force my left heel so stay on the floor- so I'm hoping recent physical exertion suggested by the doc to tire the muscles and my strength testing is what has caused it to cramp/ ache the past number of days and not ALS. I also hope it has always been a little smaller than the right and my hyperawareness of it, and the pain in it, is what has drawn my attention to asymmetrical differences.

I think I wouldn't be so worried if all the twitching felt the same- with random sporadic twitches all over. It's just that it started a month ago in this calf and has stayed there ever since with this vibrating feeling at night, and now pain with cramping.

I have had a lumbar MRI which was clear and have an EMG scheduled in a week. I am desperately hopeful that it comes back clear which my doctors think it will, but this recent progression of some twitching, to constant vibrating, to pain, to cramping is scaring me that it is limb onset. However, my feet are both fine, and I would have suspected atrophy to show there first rather than a knee or calf, or to have shown some form of foot drop if I am having ALS related cramping ????

Whilst it hurts, I can still run/ walk at my usual fast speed, hop on one foot, stand on tip toe [on both feet I wobble around doing this but can do it] skip etc.

I know the typical feature of ALS is to show weakness first, but with being a young 25 year old female, if I get the disease I wouldn't follow the typical pattern I feel I am simply waiting for weakness to appear as it has only been a month of 24/7 twitching in this leg for me.

Any advice would be so gratefully appreciated, as I haven't really seen any posts similar to this on here.

Thank you.

Re: Extremely anxious to have clear ALS symptoms

PostPosted: September 30th, 2014, 5:47 pm
by reanne2489
Also, just to be clear, my blood work for any vitamin/ mineral deficiencies was clear, no hypothyroidism and no Lyme disease despite a nasty bite by something [presumably a spider or mosquito] on this left leg back in June.

Also, in relation to tightness- I have had occasional feelings the leg was almost in cramp since the twitching began...although the doctor did tell me to do exercise at this time to tire the muscles. So the cramping/ tightness was coming more frequently after workouts. It would ease on days of not working out and there wouldn't be the hard muscular feeling one gets when a cramp is in full swing just a feeling of tightness.

The cramp I just experienced was a full cramp, and I'm hoping just down to the fact my leg was already sore/ aching today and that I did strength tests in the evening causing it to get tight before bed.

Again, as I said, the main reason I'm freaked is this left calf is a "hotspot" with not let up in twitching activity- either with twitches being seen or constantly felt in the calf. It feels weaker/ shakier than my right leg, especially at the joints and when doing single leg exercises, and it is noticeably asymmetrical in shape at the knee and size of the calf. There has been no foot drop or weakness in terms of what I can do with it since the twitching began a month ago.

Any advice on how normal this is for BFS sufferers or if I should push for further tests would be so gratefully appreciated. I've been going so crazy over this that I've been prescribed valium and am seeing a counsellor.

Thank you

Re: Extremely anxious to have clear ALS symptoms

PostPosted: September 30th, 2014, 6:11 pm
by reanne2489
Furthermore, only because I want to try and be as clear about my symptoms as possible...

Because I don't have any real "key" triggers, other than a heightened awareness of ALS, I don't know what might have sparked this 24/7 twitching/ pain etc in my left calf.

I don't have deficiencies, drink a decent amount of water/day, and although China has taken its toll with a bad sinus infection in March of this year, and ear/chest infections in winter of last year, I'm not sure if they would count as the viral infections to trigger it.

Also, whilst I know stress can trigger it, I've always been a worrier, and never experienced anything like this. I had a constant left eye twitch for pretty much over a year but put that down to dry eyes, and would always get the occasional abdominal spasm and twitch in a leg, but nothing like my recent experiences.

Re: Extremely anxious to have clear ALS symptoms

PostPosted: September 30th, 2014, 6:22 pm
by Scboy
Sounds like classic BFS to me. You didn't by any chance get any vaccinations before you travelled to China did you? I got my muscle symptoms ( twitching and stiffness) after I got some vaccinations before a business trip to China. My doc didn't come out and say that was the cause, but said the timing is awefully suspicious.

Re: Extremely anxious to have clear ALS symptoms

PostPosted: September 30th, 2014, 6:39 pm
by reanne2489

I did get a lot of vaccinations before coming to China but that was August '13 so not this summer when everything started.

I have been on and off a lot of different antibiotics this seems every time I get one ailment another follows...and I know antibiotics are for bacterial infections and not viral infections which research suggests can be a cause of BFS, but I had hoped it might at least indicate a weakened immune system, possibly by a virus in the past that is now presenting itself with BFS.

Just so scared due to the differing nature of the "hotspot" twitching and anatomy than the other milder twitches I experience around my body... :cry:

Re: Extremely anxious to have clear ALS symptoms

PostPosted: September 30th, 2014, 6:48 pm
by LKP1231
I think it could very easily be from the vaccinations and the infections plus all the antibiotics! That all together must do a number on your system!

Re: Extremely anxious to have clear ALS symptoms

PostPosted: September 30th, 2014, 6:57 pm
by reanne2489
I certainly hope so. My doctors keep telling me they think it is benign due to my age and gender [i'd be in the extremely small percentage of ALS patients- i think 10% of patients with ALS are <25 years old] and only 6/7% of ALS sufferers present with fasciculations/ twitches as their only symptom.

Don't get me wrong, I certainly PERCEIVE weakness in my left leg in terms of my knee feels strained as does my outer calf and top of the foot, but I can still do everything- except squat properly with that leg [but even a personal trainer years ago barked at me for not keeping my left heel down during squats and to squat deeper which I found hard, presumably due to tightness in the left calf muscle...] So all in all, im hoping this leg is suffering more with tightness and cramping due to overall physiology of that leg and perhaps the crappy flip flips I wore for 4 months has done some injury to it...It's just to twitching out of nowhere [albeit with awareness of the ice bucket challenge] that has NOT STOPPED for a month really panics me.

Thank you guys for your input though :D

Re: Extremely anxious to have clear ALS symptoms

PostPosted: September 30th, 2014, 7:08 pm
by LKP1231
I will tell you my symptoms started along with the ice bucket challenge. Yup, seven weeks of odd twitching that pretty much started all over, mostly in my feet and legs. I lost my first husband to *** over 8 years ago. He did not start out with twitching! And yet this is what I've been dealing with awaiting my emg Thursday. Life is too strange.

Re: Extremely anxious to have clear ALS symptoms

PostPosted: September 30th, 2014, 7:14 pm
by reanne2489
I think it is crazy what your mind can do to you. ALS is a absolutely brutal diagnosis to hear [I've been talking to my counsellor about fear of it and all the repercussions it would bring], and whilst there is no cure, I find it shocking that it takes so long to diagnose. You would think medical testing for neurological disorders, since they are so varied, and increasingly common in white, western populations, that speedier techniques for their identification would be available.

After all, this forum exists, not just for the management of BFS, but out of anxiety at the 'waiting game' we all play to see if our symptoms worsen into something more sinister.

I am certainly anxious because my overall body twitching was at its peak when I first noticed the twitch in my left calf, but they have calmed down somewhat, whilst my calf has become more and more pronounced. It is certainly aching right now with the feeling of pain/ tightness one gets after terrified its unreal.

Re: Extremely anxious to have clear ALS symptoms

PostPosted: October 1st, 2014, 1:12 am
by Yuliasir

you seem to be a clever young person, having counselor and understnding that your fears were greatly induced by IBC. So I think my input may be just to clarify a bit about cramps.

Let me tell you that leg cramps are not a symptom of ALS. Also, and I wonder that none of your doctors did not explained this to you, it is absolutely normal to have tightness and soreness after cramps as cramps mean ishemia of the leg muscle (and vice versa, ishcemia causes cramps). So if your leg cramps are persistent, fisrt of all you may think about seeing flebologist, getting coagulogram/trombogram and ultrasound of leg veins. Most probably your legs suffer from some minor ishemia.
Night cramps in the bed are very common. I have them for years without any ALS of course. Daytime cramps are with me for approx 3 years since BFS start and they were finally exmplained as a result of oral contraceptives intake and related chnages in blood viscosity. I have cramps even with pretty normal coagulogram by the way which just mean that I do not have enough blood supply to my legs. This often happens both to sedentary lazies like me and to overfit athletes (due to the fact that vessels just can not grow fast enough to supply the bulk muscles).

Leg cramps and hand (finger) cramps are mostly of circulatory origin, not neurological.

I aslo have cramps in other parts of my bosy and as I have them for wellover 5 years now, looks like they also are not related to ALS but just to overall hyperexcitability of my nervous system.

Also about ALS diagnosis and how long it takes... Of course if we are talking about percieved ALS, it takes a lifelong to prove that person has no ALS. In vast majority of cases diagnosis of possible or suspected ALS might be assigned withing few weeks from onset of clinical or even subclinical symptomes cleared at a clinical exam. As far as I know, most probable term is about 1 year to CONFIRM or to CLEAR this 'probable" status as diagnostic rules require not only signs to be found but they have to constellate into devloping picture in time and space (as well as with MS for example). That is not becasue we do not have proper diagnostic means, but becasue of the nature of disease itself. And biomarkes are not developed yet to be more or less associated with the possibility of having ALS as we just do not know what to look for. Mankind was aware about oncological diseases since Hippocrates, severe debates of the origin were held in 1920-30-40th (and still there is no signle theory, as it seems to be a comlplex systemic disorder which may be caused by stress factors of various origin, from radiation or chemicals to viruses, and by spontaneous mutations), and biomarkers to check you for possible onco diseases had appeared only recently on the basis of almost 100 years of strong scientific brainstorm.

So, consideting all bad and stupid consequences of IBC, like several deaths and clear rise of ALS fears, I hope finally it would do a good job to rise also same brainstorm as we had for cancer. With the same result - now cancer is not a 100% death sentence anymore, not each and ever at least. we also must consider that ALS is indeed much less frequent than cancer...

Re: Extremely anxious to have clear ALS symptoms

PostPosted: October 1st, 2014, 10:00 pm
by reanne2489
Thanks Yulisir

I think what has me most spooked is that if I stand with my legs together, when my knees are side by side, my left knee [My super twitchy leg btw] has a very pronounced inward curve compared with my right knee.

Also, a friend who is a masseuse says my left calf feels softer than my right. I have been measuring both, and there is very little difference in measurements; like 0.2 inches and I know of perfectly healthy people who have up to 1 inch differences in their leg widths. However, because the constant twitching/ buzzing/ vibrating I have is in my left calf it freaks me out that the muscle/ size of this leg is becoming noticeably smaller to myself and others.

I do not feel any clinical weakness, but certainly I am more aware of the strain on my knee, aches in my calf and around my ankle/ upper foot.

I have always had tight calf muscles- doing squats for example, has always been difficult for me as my heels, and especially my left heel, never wants to stay on the floor. I know this can be a sign of muscle weakness in the leg, but hopefully not sinister leg weakness.

The problem with ALS is the typical progression of it isn't always followed, especially in young people who contract it.

I just don't know if I could have muscle wastage and not experience some form of clinical weakness...?? I have read patient stories who said they had body wise fasciculations and were losing their personal level of strength before being diagnosed, even though doctors were satisfied with their strength performance in the clinic.

I just want to hope that a childhood/teenage injury I had is playing up again- my left knee was always prone to being weaker, and my calves have always been tight. I just hope that wearing really bad shower sandals over the summer caused a strain in my leg muscles which have affected my joints.

I also read an interesting article about how blood tests for Magnesium levels are pretty much null and void because our blood only carries 1% of our Magnesium, and lack of magnesium causes so many problems including twitching and cramping and even muscle weakness, lack of concentration etc- hence it's link to many diseases like diabetes, MS etc.

Any thoughts or advice on this, or if anyone else has/is experiencing weakened muscles/ decreased muscle size in areas of twitching would be greatly appreciated.

Re: Extremely anxious to have clear ALS symptoms

PostPosted: October 1st, 2014, 11:50 pm
by Yuliasir
as you had a childhood trauma, did you seen an orthopedist then? Did you seen this type of specialists now? What did they say regarding the inward curve of the knee?

You contradict a bit or I may misunderstand you: you say measurements give you only 1/5 inch which is really nothing in circumpherence difference, but at the same time you say that the differenence is notable to others?

Different muscle 'density' is ABSOLUTELY normal and depends on what the leg is the main one. I was once urged to do intramuscular injection to my husband and I was so surprised that his butts are DIFFERENT: (and he was quite an athlet at that time, doing a lot of walks, bike riding etc.) one is hard, and another one is soft (visually they are quite similar).

NOt being able to keep heels on the grouns while doing squats for me rather tells that you have tight tendons, and I do not see noting specifically good in forcing them to keep your heels pressed, if it causes you pain...

Patient stories you read are also about perceived weakness. People with anxiety are also not 100 % protected from ALS so among 6 billions of people on the globe it would be several like that. Perceived weakness could go ahead of clinical of course, but their BFS (which they might have too as it is very common) did not DEVELOPED into ALS, as those two conditions is not inter-related. Just different mechanisms. In our case cognitive cotex is involved, plus focal excitation in the motor cortext. In case of ALS there is total hyperexcitation of motor cortext but for the very short perod - like few weeks, afer which degeneration and related clinical issues (weakness, paralysis, paresis) are coming in quickly and inevitably.

Wearing "vietnamki" (as we call this rain sandals in Russian) really puts a lot of load to your knee and ankle muscles, as there is no rear part to hols the ankle and you always do an extra effort to hold the whole footwear together with the foot. So your foot, ankle and knee are really suffering. If you had already some injury on the knee, it might be even worse. So I would consult orthopedist or orthopedic surgeon. Some people really SHOULD NOT wear rain sandals (similar to the fact that some people should not wear sneakers, high heels or other kinds of footwear not sutable for their kinematics). Also consider please that rain sandlas have a flat sole therefore you may have bad consequneces like shin muscle distortion, split shin etc.